PULMONARY HYPERTENSION: A PATIENT’S SURVIVAL GUIDE

Woman asking questions

Find answers to these and other questions in the Survival Guide

 

Pulmonary Hypertension: A Patient’s Survival Guide is a resource book for patients and caregivers that was written by PH patient Gail Boyer Hayes and is published by the Pulmonary Hypertension Association. Known informally as just the "Survival Guide,” this important book serves as a soup-to-nuts guide for patients and their loved ones covering topics like the mechanics of PH, the latest treatments, patient care and lifestyle issues.

The latest Fifth Edition, 2014 is now available as a print book. The Fifth Edition, 2013 is available as an e-book. Order your copy today:

Chapters include:

  • The Magic of PHA
  • How Do I Really Know I’ve Got PH? (diagnosis)
  • PH: The Other High Blood Pressure (how the disease works)
  • Who Gets PH? *
  • Conventional Medical Treatments*
  • PH Drugs: Prostanoids*
  • Other PH Drugs*
  • More On PH Drugs* (treatments on the horizon, combination therapy)
  • Surgical Treatments*
  • Tell Me, Doc, How Long Do I Have?
  • Children and PH: Babies, Kids, Teens and Family Planning
  • Caregiving*
  • What to Eat When You Have PH
  • Dealing With Emergencies, Doctors, Colds and Flu
  • You’re Not the Only One with the Blues*
  • The Active Life: Working, Exercising, Traveling and Living
  • Insurance and Legal Matters*
  • Resources*
  • Appendices* (drug chart, how to handle intravenous emergencies)
  • Glossary

*denotes chapter revised for the Fifth Edition, 2014 Revision

Details

Author, Gail Boyer Hayes, wrote the Survival Guide to help answer the questions that a newly diagnosed patient and his or her loved ones may have after leaving the doctor’s office with a PH diagnosis. The book explains the disease process, presently available treatments, and promising new treatments that may be available in the not-too-distant future, taking away much of the scariness of PH.

The book also frankly discusses difficult subjects like life expectancy, the risks of various treatments, and how PH can sometimes be inherited. Anecdotes about how other PH patients have coped with difficult situations and suggestions on how to make patients' and caregivers' lives easier are included, as are suggestions on getting insurance coverage and free legal help in dealing with government agencies. For those who want to explore beyond the covers of the book, there are descriptions of helpful organizations, websites, PH drug companies and an index.

To keep the information in the Survival Guide up to date, the book is revised annually by a team of volunteer patient and medical writers under the leadership of Ron Oudiz, MD, the book’s medical editor. The most current version of the book is the Fifth Edition, 2014 Revision.

Order a Survival Guide

 

Survival Guide in other languages

PH organizations around the world have translated the Survival Guide, making this valuable resource even more accessible to the international community. You can now read the book in Spanish, Chinese, Japanese, Korean and Farsi, and more translations are on the way. Learn more

Are you a PH patient with strong editing skills?

You can become part of our patient reviewing team! For every revision of the book, this team reviews content to make sure it is understandable to a patient audience. The Survival Guide was originally written by a PH patient for fellow patients, so your voice is ever so important. Contact Guidewriters@PHAssociation.org to learn more. 

 
 

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Survival Guide

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.